Experiencing mental health diagnosis: a systematic review of service user, clinician, and carer perspectives across clinical settings

Abstract

Receiving a mental health diagnosis can be pivotal for service users, and it has been described in both positive and negative terms. What influences service-user experience of the diagnostic process is unclear; consequently, clinicians report uncertainty regarding best practice. This Review aims to understand and inform diagnostic practice through a comprehensive synthesis of qualitative data on views and experiences from key stakeholders (service users, clinicians, carers, and family). We searched five databases and identified 78 papers for inclusion, originating from 13 countries and including 2228 participants. Eligible papers were assessed for quality, and data were coded and then developed into themes, which generated a model representing factors to consider for clinicians conveying, and individuals receiving, mental health diagnoses. Themes included disclosure, information provision, collaboration, timing, stigma, and functional value of diagnosis for recovery. Variations between different stakeholders and clinical contexts are explored. Findings support an individualised, collaborative, and holistic approach to mental health diagnosis.

Perspectives on ICD-11 to understand and improve mental health diagnosis using expertise by experience (INCLUDE Study): an international qualitative study

“…There is evidence that this facilitates rapport and engagement, and may support recovery. 24 Coproduced shared summaries could also allow greater elaboration of contextually situated lived and felt-experience and the local language and idioms used to describe MH phenomena. These shared summaries could also be used for public engagement, health education, and clinical training.…”

“…Findings also suggest that explanatory information received during the diagnostic process can aid understanding. 24,25…”

Increasing Psychosocial Health with Cognitive Therapy in Schizoid Personality Disorder: A Single Subject Design

“…Such experience of mental health diagnosis does not seem particularly uncommon in the context of a recent systematic review of qualitative literature on this subject, which highlights the importance of collaboration between individuals and services, establishment of helpful therapeutic rapport, timing and subjectively perceived accuracy of diagnosis, provision of relevant information, and subsequent focus on individual psychosocial recovery (Perkins et al 2018).…”

Participatory action research to pilot a model of mental health service user involvement in an Ethiopian rural primary healthcare setting: study protocol

“…When service-users do have contact with mental health services, the system can hinder [39] or deprive them of any real chance to participate, or their input may be devalued in decision-making with respect to aspects affecting their lives [29,33,40]. Health systems value and legitimize service providers to act in the "best interest" of service-users [36,41].…”